A Perspective on the End of Life: Hospice Care

Thomas J. Simms, RN, CHPN

Disclosures

Topics in Advanced Practice Nursing eJournal 

In This Article

Hospice Defined

Hospice is not a place, but a concept for healthcare delivery to those dealing with life-limiting illness. Hospice focuses on creating a natural and comfortable end-of-life experience for those confronted with a terminal condition. Through a range of palliative, medical, nursing, psychosocial, and spiritual care provided by an interdisciplinary team of experts, hospice seeks to manage symptoms and provide comfort when cure is no longer possible.

Services provided under the hospice benefit for the patient and family include:

  • Physician care

  • Professional nursing services

  • Personalized home health aide care

  • Social worker counseling and supportive care

  • Spiritual consultation

  • Caregiver support and training

  • Pharmaceutical services for the management of symptoms and pain control related to the terminal diagnosis

  • Durable medical equipment service to assure maximal comfort and assistance related to the terminal diagnosis

  • Physical, occupational, speech, and nutritional consultation for symptom control related to the terminal diagnosis

  • Respite care

  • Bereavement support for both patient and family

  • Volunteer services

As part of the continuum of care, hospice is designed to provide comfort and support for hospice-appropriate patients and their families in order to improve quality of life. Hospice services and the manner in which they are provided are determined by an interdisciplinary team (IDT) of healthcare professionals who are specially trained in working with dying patients and their families. These physicians, nurses, social workers, chaplains, certified home health aides, volunteers, and ancillary therapists work together with the patient and family to develop the hospice plan of care.

Just as with curative therapies and interventions, both palliative and hospice care are recognized as medical options, with the key distinction between palliative and hospice care being determined by the preferences and wishes of the patient. That is, under true palliative care programs, no specific therapy is excluded. Patients receive all the comfort and symptom management care needed and still retain the option to seek specific and curative therapy. Hospice, however, typically focuses on the provision of comfort care and symptom management interventions when curative therapy is no longer desired or appropriate for the patient.

Once enrolled in hospice and under the direction of the IDT, hospice services can be provided at different "levels of care." Those levels are:

  • Routine home care (whether patient is in own home or resides in a facility)

  • General inpatient care (provided in either a skilled nursing facility providing 24-hour nursing care, hospital, or a free-standing hospice inpatient unit)

  • Continuous care (determined by assessment)

  • Respite (placement in an approved facility for the relief of the patient's primary caregiver to a maximum of 5 days per episode)

The determination of which level is most appropriate for the needs of the patient is made by the members of the IDT with input from the patient and family. Standards of care to ensure quality are identified by Medicare, which certifies the majority of hospices nationwide. In addition, many hospice organizations are members of the NHPCO, which also endorses and encourages a sharing of ideas and solutions for hospice at the national level. Many hospices also attain and maintain accreditation by either the Joint Commission on the Accreditation of Healthcare Organizations (JCAHO) or the Community Health Accreditation Program (CHAP) to further guarantee quality of services and care.

Hospice care that is covered by Medicare is chosen for specified amounts of time known as "election periods." Initially, the patient's attending physician and the hospice medical director must certify a patient for hospice care coverage for a 90-day election period. Subsequent election periods include a second 90-day period and an unlimited number of 60-day election periods. Each subsequent election period requires that the hospice physician recertify the terminal illness with a 6-month life expectancy. Reimbursement is made to the hospice for each day of the election period based on 1 of 4 per diem rates set by Medicare, commensurate with the level of care.[3]

The hospice benefit is designed for use by patients whose prognosis is terminal, with 6 months or less of life expectancy. However, the Medicare program recognizes that terminal illnesses do not have entirely predictable courses; therefore, the benefit is available for extended periods of time beyond 6 months, provided that proper documentation and certification of terminal illness is completed at the start of each coverage period.

The Centers for Medicare & Medicaid Services (CMS) also recognize that making medical prognostication of life expectancy is not always an exact science. Thus, physicians and other clinicians need to use the guidelines developed by CMS when determining hospice prognosis. In the vast majority of cases, there is no risk to a clinician about certifying an individual for hospice care that he or she believes to be terminally ill. However, should the fiscal intermediary determine, by audit, a patient to be ineligible for the hospice benefit, payment to the provider may be denied.

More recently, nurse practitioners may also be reimbursed for hospice services under Medicare Part B, although they may not certify terminal illness or 6-month prognosis.[4] Under the Hospice Benefit, the patient always retains the right to revoke his or her acceptance of the benefit without penalty, or he or she may be discharged from the hospice service should the medical condition stabilize or improve for an extended period. The patient may be readmitted if his or her condition changes over time and the physician again certifies the terminal illness.

Despite a growing appreciation and utilization of hospice care both as a philosophy and as a fully covered Medicare benefit, there appear to be 2 perceived barriers to its broader acceptance and use. First is an understandable reluctance to openly contemplate the end of life. In a 1999 survey conducted by the NHPCO, it was noted that Americans generally are reticent to discuss hospice care with elderly parents. According to the survey, fewer than 1 in 4 Americans have put into writing how they wish to be cared for at life's end. About 1 in 5 have not contemplated the subject at all, and a slightly smaller number told surveyors they have thought about it but have not shared their thoughts with others.[5]

The second perceived barrier is a lack of knowledge on the part of both patients and providers that the covered hospice benefits are both broad and readily available virtually everywhere in the country. As with other covered services, payments for hospice care generally are made to providers based on prospectively set rates that are updated every year for inflation. Hospice care is primarily a specialized type of home healthcare, and as is the case with home healthcare benefits, hospices are served by regional intermediaries for Medicare billings, payments, cost reports, and audits.

It may also be argued that another barrier to hospice and end-of-life care is the perception that hospice means giving up hope. In fact, hospice does not seek to take away hope. Rather, hope is seen by hospice workers as an essential tool to coping and dealing with a particularly difficult situation.

What seems to happen is the nature of the focus of hope changes when the illness is known to be incurable. Perhaps it is no longer realistic to hope for a cure from the disease, but the patient might still hope to accomplish some meaningful event in his or her life...an anniversary, a birthday, a graduation, a wedding, the birth of a grandchild, to finish a painting or a poem, to put together a photograph album, to write a special letter, or to simply say "I'm sorry" or "I love you" to someone close.

Hospice does not seek to take away hope. There is a social and spiritual need for hope. Some people fear that accepting hospice in their lives means "giving up." They feel the fight for life must continue no matter what the situation. To the contrary, offering patients realistic hope through hospice care helps them work through the experience. Some dying patients may focus their hopes on reformulated goals such as the relief of pain, an improved quality of life, or simply the hope for a good night's sleep. By working with patients to identify their individual goals, hospice fills an essential role in helping individuals preserve and maintain hope.

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